12.31.2011

Hockey!

Being the Minnesota girls that we are... We love hockey! I don't know if it's the ice and cool breeze or if it's the names we can't pronounce or spell. Cute boys who can skate. The fights! Well duh it's the fights! It's all about full contact sports with Mags. She likes action. My Dad and Kelly were able to get us Chicago Blackhawks tickets (13th row near the goalie- sweet!)

The Wee fan excited for Hockey!
All decked out in proper attire including a smile.
And she was so happy during their warm up! She loved the straw in her drink, impromptu chewy - very clever little girl.
Hockey @ Madhouse on Madison
Everything was going well until... National anthem. Load noises, louder music, weird lights... It was all down hill from there.
She just couldn't take it. My little fan wanted to get out of there so fast it wasn't funny.
But watching the game from the bar inside the arena was perfect...
What did I take away from this experience? Well...
1. Nothing ever goes as planned - So What? That's life! I'm not going to stress or get mad over it but I think a babysitter will be arranged for next time.
2. Recognizing what the world is like through Mags perspective is complicated and I need to work on understanding it.
3. Maggie looks darn cute in a hockey jersey!

11.06.2011

Overwhelmed!

So much has been going through my thoughts, days, & feelings. I keep thinking, really hoping, that life slows down a bit. But in the mean time reality slaps you in the face and it kinda hurts!

10.22.2011

Heart, Teeth & Blood Work oh My!

The day finally came and went but it was a LONG day.
We arrived at the hospital (Maggie and I had not eaten in 12 hours or had any liquids) at 9 am and I though she would be under by 10 and out of surgery by 12.
Was I wrong!
She wasn't even put under until after 12, that's 3 hours we had to kill in a boring hospital room that, thank God, had a TV with PBS so she watched clifford and arthur. Then after getting bored with that I pulled out the iPad and she watched espn football for an hour.

The nurses were amazing and We are fortunate to have a fantastic children's hospital! However It was a long day... by 2 she was finally in surgery and I had to have something to drink so I found the cafeteria and of course it was closed. Awesome. But the guy cleaning took pity on me and he gave me a bottle of diet coke :) I went back to out room thinking it would take 1 -2 hours... more like 4 :( Only positive I could think of was that the TV had travel channel so I watched 4 episodes of No Reservations.
Waking up his time was much harder than previous experiences. She did not take to the multiple rounds of anesthesia well, on top of morphine and empty stomach it was not good.
Yes, she LOVES her vikings! Good news is were moving along with her Heart doctor, teeth are clean and she only had a couple cavities (which for as difficult it is cleaning her teeth, is fantastic!)

9.09.2011

Pre-Op

Nurse: Magdalaina?
Me: Maggie, It's your turn. Let's go
Nurse: How are you today? (looking at maggie...)
Me: She's good but she doesn't care for doctors or nurses for that matter
Nurse: Ok, Can you stand on the scale? I need to get your weight
Maggie: (refusing to stand on scale without death grip on me...)
Myk: (tiny bruises and broken blood vessels become visible)
GOOD JOB!!! (after she finally holds still for 2 seconds)
Nurse: Can you stand nice and tall?
Maggie: (thinking to herself - I don't think so scooter!)
Nurse: Do you wanna try and get blood pressure? Or maybe will skip that...
Myk: ( thinking to myself - She learns quick!)
Nurse: Ok, Well Maggie your in the 46th percentile for height and 2nd percentile for weight...
Myk: (deep breath, I knew this but it's still hard hearing every time)
Nurse: Well Dr. Hoffman will be in with you shortly
Myk: Thank you

Dr: Hello! Are we exciting how cleaning teeth and looking at your heart?
Myk: I'm containing my excitement
Dr: Wonderful! paperwork and everything is ready for monday. No fluids and solid foods after 3am and clear liquids up till 9am. You've been through this before... I would recommend you bring some comfort items like a favorite stuffed animal. Does she have one?



Myk: Um... Yeah but he's as big as I am. How do I explain to security and the nursing team this enormous bear?
Dr: They won't mind! We can arrange for double room
Myk: LOL
Dr: Well think about what will make her comfortable...

Last time the nurse gave her apple juice and I stroked her hair as she woke up and she just looked cold and out of it! She was so unhappy! I was able to get her mostly dressed in pajamas and load her into the car, I took her home and she slept for hours. It's hard watching a child, especially yours go under - it's so fast one second she is crying and scarred the next lifeless looking. And then the doctors rush you out so they can work but I always look in just to see her. And then I have to pretend to keep myself busy as I don't panic or worry - yeah RIGHT!?! I'm always nervous and anxious each time. It's one of those things that does not get easier with repitition.

I tell myself, "they know what they are doing, your child is in excellent hands, this is necessary and for her benefit, just take a deep breath and relax myk"


I hope most parents never have to go through this procedures like I have, like Maggie has!

8.17.2011

I may be crazy

Their is a slight possibility that I am crazy. I have registered for a full fall semester...

Yup

Including a Biology human genetics course with LAB...

Why?

I have this crazy idea that I will be able to work and care for my child and do something I love so that the whole aspect of money will still be challenging, I'm never going to be warren buffet but independent and making personal progress. Which... lead me to deciding that slowing finishing up school was not what I want to do. I want to finish yesterday! My impatience with not personally progressing has reached new levels so I am forcing myself to take control of what I am able to control and make it work!

How this is going to work you ask yourself? Not entirely sure yet

I know I have a block of time in which Maggie is at ABA and I can be in class as well as study.

That's my game plan lets see how well it goes after a few weeks :-) I finished up my summer class with an A, so I am positive moving forward!

Geneticist

Phone rings... Hello?
Good morning this is Dr. Mendelsohn's nurse and I am calling to inform you that their is now a simple blood test to determine conclusively that your child has Kabuki syndrome.
Okay... I guess then it is a good morning...
We will schedule an appointment, and we look forward to seeing you!

Well this was the conversation a few weeks ago and then this past week I pulled Maggie from ABA and we headed to Children's hospital to see her wonderful geneticist.

Why do I like this doctor so much? So glad your curious...
  • I like that going with seeing us after a year or even 2 she remembers details about Maggie, and even myself.
  • I like that she doesn't talk down to me or explain it to me with the assumption I'm an idiot - yes I have had several specialists do that
  • I like that she is positive, in the sense that she understands the daily issues but focuses on the milestones and developments that have occurred!
  • I like that she has a sense of humor, not all doctors do.
  • I like that she gives me practical suggestions and not just a brochure or website to go to.
Overall it was a positive appointment. We were able to combine blood work with her upcoming dental work and heart echo (which are under anesthesia) - The one thing that was brought up and no surprise to me, it's not like I don't try!
Her weight!
She is just a skinny mini, doesn't eat a lot, can be picky, limited diet, very active and burns off everything she consumes... BUT we talked about healthy but fatty foods to add her diet. Most kids I know, parents have to start sneaking in vegetables or fruit and at a certain age start to control their intake so they are a healthy weight. But not my kiddo!

She is just too much of a supermodel - She needs to put some meat on her bones :)

8.09.2011

1 step forward 5 steps back

Ever feel like your taking one step forward only to go back 5? Well then your not alone! I recently have been focusing on the little things so that I would have some sense of accomplishment at the end of the day, however usually I still feel like the world is agaisnt me and I need to work on my Karma or something! The saying "When it rains it pours" comes to mind. It can't just be one thing that goes wrong but a hundred things! why? Why? WHY?

I'll give you an example for those of you that would like to feel better about your life :)
(I can relate to those dinosaurs)
I managed to save up a years worth of mileage reimbursement forms to fax in - with the thought that I could have a bit of a financial nest for if/when something came up. I am not exaggerating after cashing the check - within a day, Maggie's Child support check basically vanished and my car died! Seriously?!?

So I'm broke again - but really that's nothing new :)

BUT have you ever noticed when money is non exsistent everything goes wrong and gets really expense?!? Why is that? All I know is that the past 2 months I have had to scrap by AND my car has died twice, a huge dental bill came and I haven't even received my dental bill yet! Oh OH it gets better - I spent hours and multiple days at school getting registered and filling out forms and trying to be on top of everything and today (13 days before semester starts) I was told I'm missing a form and have to start from scratch, because I was missing this form I was dropped and my award money was not sent out ... So I am hoping and praying that the classes I need are still available and trying not to panic or freak out...

I am not a happy girl


8.07.2011

Mat Kearney & Owl City

I Love going to Concerts, especially when I have an awesome date like my brother Andy! He loves Owl City as much as I do and he loves his concerts all the lights and drum rifts its a fabulous time. Maggie got to stay home with the grandparents!

Mat Kearney was fabulous! I love his voice and his live style is very similar to Jason Mraz which means he interacts with the crowd and is a great performer. I love his song 'Undeniable'
Fun lights and great music - The whole experience of a concert is the best! I love when your heart is beating with the drum and you can real the vibrations coming up from the floor.
While he sang 'Fire and Rain' he came into the crowd and began to walk towards us. This is him as he approached me... he came up and hugged me and then did the side hug as he sang which I was singing with the crowd, he put the mic in front me and we sang together! It was fun and definitely a memorable concert moment. I am now an ever bigger fan of his.
And last and certainly not least - Adam Young AKA Owl City! Vibrant, colorful, musically awesome and a wonderful concert! Second time seeing him and won't be the last!
I loved the songs 'Angeles' and 'Lonely Lullaby'
And as always 'Fireflies' & 'Vanilla Twilight'
Can't wait till the next show.

7.17.2011

As of Late

A typical day for Myk n Mags, I have to laugh a little to myself when I see the word typical... but you understand what I mean... Our schedule is pretty consistent.

6am - Myk wakes up showers and gets ready
6:30am - Maggie wakes up and gets ready
7:10am - breakfast in the car, drive to ABA
8am - Arrive at Autism Matters - Maggie works hard, learns new and interesting things!
I have classes, errands, meeting, paperwork, homework etc during the day until I finally drive back and
4pm - Maggie pick up and drive home in rush hour traffic
5-5:30pm - Arrive home, prepare dinner, bath, football or VeggieTales, books and play time
7pm - Maggie is requesting with signs to go to sleep and believe me, she's ready!

Somedays she looks like this... not so happy and in need of a snack
But most days she looks like this... 40 hours a week is a lot and she is one tired girl! but she's making such progress! New signs, better eye contact, more sounds, better behavior and all around wonderful progress :)


My sleeping angel face

Pan - O - Prag Part 2

Ever wish you just stayed home? This event was suppose to be relaxing, easy going and I thought how bad can it be? My mom, uncle Andy and I took Maggie to meet some friends to watch the parade and cheer our friend on. We found out before the parade that he was pretty far back and it may be an hour till we see him, that was the first bad part. The second came when the parade was delayed for half an hour and we had already been waiting for an hour. THEN the fire department put a hose out for the kids to play in which was fun except it sent Maggie over the edge! (Next year we can't be anywhere near it!) She wanted to play in it and I hadn't brought clothes for her. My mom took her and she was soaked and cold after playing for almost an hour I cut her off. I'm a terrible mother but her lips were blue. This is when things started to go wrong. Maggie started crying and melting down, I wanted to leave, but my car was blocked in by the parade and we were their for a friend. So I tried everything to calm her down. Walked with her, squeezed her to give her pressure, cereal, sippy cup, Uncle Andy and our friend Noah tried to help, my mom took several turns. Everyone in our group just felt for her and wanted to help and kept saying 'it's okay', 'she'll eventually tire out and want to watch the parade.' The moms were joking about how awful their children were when they were young, it put me at ease because I was feeling so bad for how miserable Maggie was. But I was also aware I was getting dirty looks, judgmental faces were glaring at me and I wanted to disappear. After several hours our friend Lars finally made his way down the parade route to us! Maggie was excited to see him and I was excited to finally be leaving!

But just before we saw him I had the unfortunate pleasure to meet the rudest and meanest woman in Lakeville. I had a picture of her but decided to delete it and make it more universal. But has anyone ever had some pretty awful encounters with strangers? This woman was so rude and nasty and I understood that my child was miserable but her words just made me so mad I was trying to just respond nicely, kill them with kindness kind of deal!

But after all that drama we saw them...


I have no idea how they do it! but I saw his video's on youtube and he's crazy talented!

Pan - O - Prag Part 1

For those of you reading thinking to yourself, 'Self, what's a Pan-O-Prag?' I can't answer that, but what I do know is my small town of Lakeville hosts a week long celebration for July 4th. It consists of midwestern fun - parades, car shows, hockey game, street food etc. This is my second year and to be completely honest it was awful but I will get into that in the next post :)

The parade part went something like this...
cute old men and their toys
marching bands!
A zamboni with a trailer (this is Minnesota after all)
more cute old men having fun
A moose, just because

Cub is our local grocery chain...
And last but not least our friend, Lars who is an international unicyclist competitor - he can do all this cool tricks like shawn white does on the snowboard but on a unicycle! He's 15!
Nothing like small town America on July 4th

7.06.2011

Rolling in the DEEP

From home to Autism Matters every morning takes about 35 minutes. Morning radio is okay but usually boring and I typically turn it off and hit shuffle on the iPod. Maggie can be quite vocal about what she likes and what she doesn't care for. Recently I have learned that she really likes Bob Dylan... And this lovely lady... the talented Adele.
This morning though was different, Adele's song 'Rolling in the Deep' came on and Maggie started to sway back and forth in her seat, her own type of dancing, and all of a sudden the sound "Dee" pops out of her mouth.

I was shocked!

I waited and she still danced and then the chorus came up again and she said "Deep"!
Clear as day!
It was wonderful and I started singing to the song which she loved and for approximately 4 minutes she was delighted with herself and her accomplishment, rightfully so!




7.04.2011

Summer Mix

I have been going slightly crazy on iTunes and finding music that I like, that the kiddo likes... and I have been finding all sorts of great new stuff and a few classics that are awesome. I like a lot of different music and I will listen to almost anything So I will share with you...

Country Lane - Telekinesis
Skip the Charades - Cold War Kids
Battery Kinzie - Fleet Foxes
Faster - Matt Nathanson
Rest - Parts & Labor
Keep On Tryin' - Poco
Half Of Something Else - The Airborne Toxic Event
Underneath the Sycamore - Death Cab for Cutie
Eyes - Peter Bjorn and John
Just a Friend - Booker T. Jones
Chapel Song - We Are Augustines
Mary - Patty Griffin
Dirt Road Anthem - Jason Aldean
&
All Things Bright And Beautiful album by Owl City!

Eclectic, Upbeat, & Great summer BBQ songs. I am usually not much of a country fan but I do like the 'Anthem' song.. it's different. And less than four weeks till I see Owl City in Concert! I am so excited :)




Myk n Mags

Someone jealous of me... that's ridiculous! A mom friend of mine confessed to me she was envious of the relationship Maggie and I have. Single parents with single children. Not that she isn't in love with her husband and we had a good laugh over that but she jokingly said she didn't like sharing her children with so many others. Now I know this woman very well and she has it great! An awesome husband! 4 cool kids. But I can see her point in a way... One child may confide in one parent over the other. Or in a sibling. And with the addition of the lack of language skills no one understands Maggie, like I do. My parents and brothers try. Her therapists are with her all day and are great. And then there are those who may care for her but aren't around often enough to know her. But I know her... and no surprise in many ways she's a mini me... and in other ways she is her own little unique person.

Maggie's Baptism

Chillin' on Lake Michigan in the windy city, thus the wild hair

It's rough having an angel face... with drool and all :-)

7.03.2011

ABA

3 weeks ago Maggie started an awesome new therapy, ABA - Applied Behavioral Analysis Therapy. If you want to learn more click Here. 40 hours a week! It's her full time job! And she is a hard worker.
Today she crashed! Hard.

I had to adjust her sleep schedule from 8 or 9pm to 7pm - which took a few days to adjust to too. And I used to wake her up at 7:30, now 6 - easier for miss happy morning girl than her caffiene addicted mother. She has fallen asleep in the car on the long drive home a few times but for the most part she's been a trooper!

Yesterday I was a mean mom and took her to evening Mass. It started at 5, she was already tired by the time we got home at 6:30 and had increased her exhaustion with excessive crying. This morning she woke up and she watched 'Finding Nemo' played with Kanye, books and spilled her cereal, by noon she had consumed nothing caloric. When she eats like a bird that's normal, but when she refuses to eat even foods she likes... never a good sign. She then cried and begged for a drink and started requesting 'Sleep, Sleep'. I put her in bed and she was out after about 2 seconds of crying and has been sleeping for the past 2 hours... I'm going to pay for this tonight...


6.28.2011

Money and all things expensive

I recently read in an online newspaper that the average child in the United States costs approximately 275,000, from birth to 18, which means this does not include college. This number included basic, but not outlandish housing, food, clothing, medical costs, school supplies etc. It did not include private education, over the top vacations, or any unusual medical costs. A few weeks ago in the Parade Magazine was an article on Autism and the financial cost on the families. 1.5 million. One of the key differences was that the child lived with the parents far beyond 18 and the medical costs were incalculable to average. Those children with medical/physical disabilities are even more of a financial burden.

I know! I know I'm preaching to the choir!

Children are expensive and Special Needs children require so many costs I never thought I would be budgeting...

Food, of course but a special diet where every product averages 4x more expensive... No
Diapers - sure until 2, Maggie is 5 and toilet training is not in the near future
Medical Insurance - I assumed I would be able to work allowing for an employer to contribute in part or provide insurance. And I thought I would have a deductible of 5,000 and never pay it every year... HAHA
So the idea that my child has 2 insurance providers, 2 premiums, 2 deductibles - and uses them - is daunting.
Childcare - I was lucky and had amazing people through church help me whenever I needed it but I know this is a huge expense for the average family and at a certain point, it's hard to find care, or PCA's or anyone who is able and willing to help watch your child. It gets harder and harder to have breaks - which are priceless!
School - public school is not an option, and fortunately private at the moment is through insurance but the future is uncertain..

The future, long term planning is going to be my best friend and enemy! A daunting task I alone get to take on!

A side note to single moms -
Child support is nice even necessary, but never depend on it.

A Fantastic Day!

It's a rare and wonderful thing when I get to have an entire day to relax and spend time with only one of my younger brothers. It seems I am always driving them to school or sports practice or art classes or faith formation OR... the list goes on. but due to conflicts and Maggie being at therapy all day Uncle David and I were able to enjoy the company of each other! I asked him what he wanted to do and without hesitation he said I would like to try sushi and go to the Minneapolis Art Institute.

Done!

I took him to a local small sushi bar that I really enjoy and ordered about 6 different rolls for him to try. He scarfed them all down, but concluded that he likes hot japanese food, hibachi, but likes the sushi too... I just love the fact he is so willing to try anything!

I love Minneapolis Museums - Minnesota is known for creating and maintaining top of the line museums and the Art museum is no different! It's front entry is impressive and screams "photograph me!"
We had a blast goofing around and taking pictures of each other - it also lead to a perfect opportunity for us to talk, which is impressive for any 14 year old boy!




Realistically with all of crazy summer plans, vacations, and school fast approaching I know this days are not as often as I would like - but that's why I cherish and hold on to days like these - as Van Morrison would sing!

6.27.2011

I'm that person!

I can't help but judge and think about how I would handle the situation when I see flat out terrible parenting! I don't mean overwhelmed or in a single moment maybe slack off in a teachable moment or stressed "Yes, you can have the chocolate" parent. I mean the lazy, allow your child to do anything and get away with everything parent. And when that parent, more importantly their offspring affects my child - I step in! Case in point - I'm sitting in a waiting room waiting for my child to finish therapy and mother with her 18 month old son sits near me and begins to talk to the moms in the room. Her son proceeds to pull every book off of the shelf and throws them around ( I grew up an English teachers daughter, we always respected books!) Instead of dealing with this child, the Mom just smiled at him. He then climbed on the table and started screaming... These types of events continued on a daily bases for a week or so, I never said anything but I'm sure my face was not covering up my feelings for her in actions.

Yesterday when picking up my child she noticed this little boy and his behavior and she decided to imitate him...

I was not amused.

I told Maggie in a firm voice, "Get Down, You do not climb on the furniture" She whined and got down. She then started taking books and throwing them. I took the book from her and said "NO! You are not allowed to throw books. We read books,k one at a time. Help me clean up! First Clean, Then look at. You may pick out a book to look at." I must have shot this mother a look because she wold not make eye contact with me after this short and sweet conversation with my child.

I'm not sure if she was embarrassed or annoyed with me but I was not going to let her child's poor decisions affect my child!

That's my rant for the moment!

6.23.2011

Maggie's Story

Recently I have been overwhelmed by how many fellow bloggers, Family's and Friend's that have started reading my blog and find something they can relate to in it. I have also received numerous emails and comments asking such wonderful and important questions - And I want to answer everyone of them! But I should probably go more into Maggie's story and how I got to this place to fully answer all of those questions!

February 3, 2006 , 2 weeks before my due date had the most uncomplicated and probably the most by the book first delivery a mother could wish for. I was induced at 2pm and my beautiful daughter entered this world at 6:30pm. All her vitals and testing were normal. She slept well, ate well, was well sized, long and perfect! Baby Magdalaina Elizabeth.

At her 6th month check up, her pediatrician noticed that her head was 2 standard deviations below normal (which I learned was a bad thing later...) She smiled at me and said don't worry it's probably nothing.

At 12 months, My child was visibly behind her peers. As a first time mom I felt it was my fault I wasn't teaching her the way right or I had done something wrong. Maggie's cousin was 2 weeks to the day younger (they were due on the same day) He was walking and making sounds. He was bigger and stronger, his family would reassure me by saying it's just because he's a boy! Maggie wasn't even crawling...

At 18 months my life started to change, Maggie began to crawl, slowly but surely. The state started to do evaluations for Early Child Intervention and to no surprise Maggie failed every test and was recommended for Speech, Occupational and Physical therapy. At that time those words stabbed my heart and made me feel like a failure. Maggie was 19 months before she attempted to walk and it was a very slow, step by step month after months almost 2 years of practicing before being comfortable on stairs and walking by herself. At 23 months she was evaluated by an opthamologist, and he determined that she needed surgery for a condition known as Strabismus (which is common in children with Cerebral Palsy) Almost on her exact 2nd birthday Maggie had her first surgery. I was trying to be calm and in my heart I knew this was a simple procedure. General Anesthesia was involved, her first time. I always thought this happened to other Mom's. Or Perhaps I was being punished. I just knew I was so excited when she woke up and was crying, a good sign of her breathing...

After the surgery it was clear by all her medical physicians that more testing needed to be conducted. At 2 years old she had no words or sounds. Mood swings and meltdowns for no apparent reason. Odd tendencies for obsessive behavior. Mouthing absolutely everything. She ate solid food but small bites and hard to get her to swallow certain textures. She was a good sleeper but I lost so much sleep worrying if she would wake up or not. Going out to public places became more and more difficult. Her eye contact was good - So I told myself it can't possible be Autism... (To me that is the diagnosis de jour, every other kid has that) But I knew in my heart of hearts that something was wrong.

This whole process took a serious strain on my marriage and after that fell apart I moved with this tiny 2 year old back into my parents home to try and figure out how to help her and to give her the best services I could. And If your going to have a special needs child, then move to Minnesota! Within a week I had her into the best geneticist and diagnostic center in the country. We met with the doctors and all the questions were about her history, her development or lack thereof, her milestones, my pregnancy, my life... I was completely honest and trying to remember every detail of what she had done, not done what I did or didn't do and I felt like I was in an interrogation room on one of the cop shows... I took the blame so personally. I still do.

At 2 years 8 months, Maggie was given the diagnosis of Autism with the recommendation for further evaluation. There was a sense of ... Okay now we have a name and we can get services, or when I'm asked about her I can give a concrete answer... but I knew that the next part was going to be the hardest part.

I met with the geneticist and She had several ideas all of which required blood work so we decided that one draw would be better than 5. After an excruciating blood draw she ruled out fragile X, chromosome abnormality, Imaginary Down Syndrome and Cerebral Palsy. Her final guess was Kabuki Syndrome - Which she described to me as Down Syndrome Medically with Autism socially - but to determine if that is what she really has we need to do a CT, Heart Echo & Upper GI Scan - Maggie had already had bouts of diarrhea, constipation, vomiting, blue fingers and turning hot/cold easily throughout her short life thus far. All of these tests made sense and on the surface I said "Yes, whatever it takes!" But in my gut, I wasn't sure if I was ready to know the answers.

Early one morning I took Maggie to Children's Hospital they put her under and escorted me to the waiting room. I was so anxious and all alone. Physically alone yes, but I felt more alone then I had in months... What if they find something? What do I do now? The Doctor came in and asked me to come into the room. Maggie was sleeping peacefully and the doctor told me they would have the results in a few hours. I picked her up and held her so close to my chest and all I could think about was the E. E. Cummings 'I carry your heart with me' poem... I received a call later that afternoon that Maggie did in fact have 2 small holes in her heart that confirmed that she had Kabuki Syndrome and that further tests were required.

This was the beginning of countless appointments, Specialists from Cardio to Ortho, Nutritionists and Therapists from Occupational to Speech. Clinics and School district evaluations. IEP's, IQ tests, Psychological exams, adaptive testing, adaptive equipment (Maggie has In-toeing, Clonis & Hypertension - all connected to the KS) such as her twister cables. I spent 2 years filling out forms, taking her to the doctor, holding her down while they drew blood, crying, meeting other moms in similar situations, & feeling absolutely alone.

For the first time in 5 and half years I feel like I am actually getting somewhere, Maggie is making progress. She is developmentally a 2 year old and throws fits as one. She is a picky eater and we jokingly call her an Italian supermodel. She constantly has a chewy in her mouth (which her SLP has said is a good thing and her drooling has gotten better, not ceased but maybe one shirt a day verses 5) She can point to what she wants which took till after 3. She is opinionated on her music ( she loves Adele, Bob Dylan, & Glee version of Billionaire) She cry's and freaks out if a song is in a minor chord, I believe she has perfect pitch and strong music abilities. She has been riding horses for 3 years and loves it! Her balance is better, her strength has improved and her love of animals is stronger. She loves football! She has 5 signs that she uses consistently and is working on 3 more! She is nonverbal at the moment but she still sounds like a Minnesota Jewish Princess, when she says things like "Oh no!" or "Oh Geess" or my favorite "OY" - reminds me she actually is listening to me...

The past few years have absolutely been the hardest few years of my life and I wouldn't wish this trial on any child or parent but I hope that I am made a stronger person because of it! I don't worry about my child, she is closer to her divine creator than I could ever dream of being :-)

I hope that helps some of you in your journey to come. It isn't easy. It's filled with tears and self doubt but I please ask me questions or just leave your comments I love knowing I'm not alone in this trial.



A Year In Pictures

The End of Year gift from Maggie's Class to the parents was a book of pictures of their children in various activities - Very creative and wonderful moments of time captured that I was not able to see in person. Enjoy a lot of pictures of one cute kid! (but I'm not biased... :-)

Look at those long fingers...

Sorry, I had to take pictures of the pages and then close ups...






Love, LOVE, LOVE this picture!
Halloween!

Thanksgiving :-)
My Lil Santa

No surprise... Vikings!

Big Laugh and Bigger Smile for such a small girl



















Thank you wonderful teachers & supportive friends!